Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

Even one simple tweet can add such a level of flavor and dimension in your life. That’s something that we learned from our latest Spotlight Story Program feature writer, British graphic designer, Asia-Jorden Alexander-Smith when we saw her viral tweet about ASOS using a model with a hearing aid on their store. Since then, Asia continues to use her voice sharing her journey living with Usher Syndrome and raising awareness for the hearing loss and visual impairment communities, while also just living her life as an awesome young adult. In her feature, Asia shares her health journey and how she conquers her world by finding what makes her confident leading with honesty. Plus, learn how surrounding yourself with a dynamic support network makes you a legend and Asia’s five pieces of life advice as a self-confessed non-expert. We are here for it!

Hi! There’s a very good chance you have no idea who I am, so let me introduce myself – My name’s Asia. I’m a 23 year old graphic designer from the lovely county of South Yorkshire, England. I have two older brothers, 11 tattoos, and a cat called Harvey. Oh, and a condition called Usher Syndrome.

Back in 1998, newborn hearing checks didn’t happen so it wasn’t until my 7-month check that doctors noticed something was awry with my hearing. I failed my follow-up auditory brainstem response test, leading to the diagnosis of a severe bilateral sensorineural hearing loss. I was given two hearing aids at 11 months old and pretty much sent on my merry way to get on with my life as the only deaf person in my family.

Until I was 19, things were relatively straight-forward with my health – routine hospital appointments, hearing tests, new ear-molds, rinse and repeat. It was by no means easy, but it was a level of stability that I’d adapted to and accepted as a part of my life, a huge factor of the very foundation of who “Asia” was.

One weekend, I thought I’d got some dust in my eyes as I started to notice a bit of shadowing – almost like a cobweb – in the centre of my vision in my right eye. After leaving it for a few days, I was sent to A&E by my doctor to get it checked out. I was eventually dismissed by an A&E doctor and told that I had posterior vitreous detachment (PVD), which apparently was nothing to worry about and I should only be concerned if the floaters seemed to suddenly get worse.

Which, of course, they did.

I can’t lie, the testing process was grim. I’m a person who had never had eye drops before in my life and suddenly I was having ten sets of various eye drops within the space of a week and a half. I’m claustrophobic, and I had to stick my head in a little box and stare at a bunch of flashing lights whilst having electrodes literally touching my eyeballs so the doctor could measure my brain activity (an electroretinogram and visual field test). I felt like some kind of lab rat being poked and prodded and honestly, it sucked.

After countless trips back and forth to various hospitals to see various ophthalmologists, I was diagnosed with Usher Syndrome Type 2, a genetic disorder characterised by deafness accompanied by Retinitis Pigmentosa. RP is a progressive eye condition which causes night-blindness, tunnel vision and, in advanced cases, loss of central and colour vision.

I remember being sat in the consultation room with my mum and my oldest brother and my heart just broke. I was told I’d never be able to drive because the minimum peripheral vision requirement was 120°. I had 10° of peripheral vision left, and I hadn’t even realised I was losing it.

I was 19 years old and forced to grow up so much faster than everybody else around me. For my whole life, I’d chased a career in graphic design and now I was being handed a visual impairment certificate, which felt very much like my dream career was over before it started. I thought I’d learned how to deal with my deafness but this? This was completely unfamiliar territory for me.

It left me questioning everything I thought I had figured out, my deafness included. I was starting to notice that I was now an adult, sitting in hearing clinics where I was the youngest person by decades, being seen by audiologists who didn’t seem to know how to deal with me with the same compassion I’d experienced in the children’s clinics.

However, as difficult and life-changing as the diagnosis was, it also came with a strange sense of relief and clarity; I wasn’t just clumsy, I literally couldn’t see the things I was bumping into because they were outside my field of vision. I wasn’t just a bit of a wuss for being scared of the dark; part of RP is night-blindness and let me tell you, being unable to see or hear in the dark can be pretty scary.

At some point after my diagnosis, I completely changed my mindset. I truly wish I could remember the exact moment but all I recall is a newfound appreciation for my life, the experiences I was having and the people around me.

My family and friends were so incredibly loving and supportive. I don’t think I’d be the person I am today if I didn’t have the amazing support network that I have around me. The support and help I have from those who love me mean that I still love going to gigs, and on days or nights out.

I go to the cinema. I go on holidays to places I’ve never been, because I know that not only is there someone there to support me along the way, but I’m confident enough in myself to ask for help if something isn’t accessible enough for me.

That support network only grew as I delved more into the world of social media. I’d never really been part of a deaf community growing up, so when I posted a little tweet about a deaf ASOS model that I’d noticed, I definitely didn’t expect the incredible reaction it received.

People were messaging me to thank me for bringing it to their attention and for increasing public awareness. People were coming to me with self-esteem and confidence issues around their own disabilities and asking for advice.

photo from info.trendwatching website and copyright belongs to them and original photo from ASOS

Now, I definitely wouldn’t call myself an expert by any stretch of the imagination but just knowing that I potentially helped even one or two people within their own lives as disabled individuals? It’s truly humbling.

There are so many amazing little communities on Facebook, Instagram, Twitter – whatever your social platform of choice is. You might have the most supportive family and friends in the world but sometimes you need people who know how it feels to be in your position.

While we’re all different, even with an identical diagnosis, there are countless people who just… understand.

I’m now an auntie to six nieces and nephews, the youngest of whom has the same hearing loss as me. I want him to grow up feeling supported and completely unstoppable, regardless of his hearing.

So, my advice as a self-confessed non-expert?

  1. Stand your ground. A doctor can tell you technical stuff from a medical perspective but ultimately? They’ve read about it. You’re living it.
  2. Surround yourself with supportive people. You are never alone. I can’t promise that you won’t encounter people who don’t understand, or are perhaps just downright ignorant, but for every one ignorant individual, there are countless others who want to support and empower you.
  3. Be honest. Be honest with your doctors if you feel like something isn’t right, or if you don’t understand all the technical jargon that’s being hurled your way. Be honest with your friends or family if you’re just too drained to do that thing you were supposed to do. Be honest with yourself and those around you if you need a bit of help and support.
  4. If you need something, ask. Don’t feel bad about asking for something to be made more accessible for you. You’re entitled to the same experience and level of service as anybody else!
  5. Be proud. There’s only one of you in the world and that makes you more special than you’ll ever know.

Who am I today?

My name is Asia, and I’m 23 years old. I’m still a Graphic Designer. I laugh at things that I probably shouldn’t. I cry, a lot (usually at films!). I’m a resilient, occasionally funny, incredibly sarcastic young woman. I have Usher Syndrome Type 2, and you best believe I’m proud.

Spotlight Story Program: Meet Lael Newton

We’ve all got baggage, but it’s the way we carry it, personalize it, and allow others to support us with it truly defines who we are as people. This is something that not only runs deeply into InvisiYouth’s programs, but also within the mantra of our new guest writer for this month’s Spotlight Story Program feature, Lael Newton.  A 19-year-old Australian, Lael was thrown into the chronic illness journey in her early teen years as she began having seizures, now diagnosed with Functional Seizures and Functional Neurological Disorder. While trying to balance all that was part of her life prior to her chronic illness to her life now, Lael has learned ways to adapt and excel. A big portion of that is using her health journey to connect, motivate and support others through her social media platform. InvisiYouth often says that YOU are the best teachers to give ideas and encouragement to others because chronic illness isn’t ‘one size fits all’ and Lael brings that forward with such confidence. Her advice for fellow chronic illness warriors, and our non-disabled allies is incredible and will fuel your hearts, we promise!

Hello beautiful people. How are you? I hope you are well in whatever season you are going through. If we haven’t met, I’m Lael, I’m 19, and I’m chronically ill.

I’ve been living this life I didn’t choose for nearly four years and it’s been one hell of a journey.

I was diagnosed with Functional Seizures when I was 16. To put it very simply, I don’t have epilepsy, but it looks like I do. I have seizures in the same way, but my brain is fine. Put my brain scans next to a healthy one, and they’re practically identical.

Functional Seizures fall under Functional Neurological Disorders (FND), where my brain works the way it should, but does some things wrong. For me, it’s how my brain processes stress.

While a normal brain would trigger the fight/flight response, my brain triggers a seizure to protect itself. My seizures are triggered by stress, both big and small. A small disagreement with someone, a major exam, and anything in-between, was enough to put me on the floor.

There is no cure, only management.

My life was flipped upside down in an instant. One second I’m playing rugby in my sports class, the next I’m on the ground. I haven’t been the same since.

I was having seizures once or twice every day for months. I dropped a quarter of my weight. I lost a lot of my hair. I lost most of me. I was falling asleep in class, and falling behind in everything. I couldn’t keep up with the pace of life I was used to. Everything was falling apart.

Everything that I loved was going away and I couldn’t stop it. It was terrifying.

I like to be control, but in an instant, the monster in my head was starting to take the wheel, and I’ve never felt more scared in my life.

This obviously didn’t help, because fear is stress, and stress ain’t great for me, creating a vicious cycle of unconsciousness.

My days are a weird mix of busy and quiet. Fitting in as much as I can into the short period of time where I can function, before I crash and need to lie down in silence so I can recover from the smallest of tasks.

I struggle with my memory, and will experience memory lapses often. I lose focus easily, and find it hard to concentrate. I will have days where I’ll be sitting in a room full of thick cloud making my thoughts hazy and difficult to understand.

I find that I can’t be in a room full of people without feeling uncomfortable, due to the crazy amount of overstimulation, which has always been one of my main triggers.

I struggle to go to big events with lots of people, lights and sound, simply because my brain can’t handle it. I’m constantly tired in every possible way. I will often need to take days off, just to regain some strength to keep going through the week.

Now, I’m so very blessed to say that I’ve been seizure free for almost a year. I’ve seen so many doctors who have helped me along the way, but it has not been an easy ride.

I still struggle with the same symptoms, probably now more than ever, but I’d rather deal with them than have a seizure every day.

I often get asked whether I would go back and change the way things went. Whether I would rather live a life without my condition. Without the tests and the needles and the hospital trips. And to be completely honest with you, I don’t think I would.

Do I wish I didn’t have to put up with all of this?

Yes.

Would I completely erase the journey?

No.

I’m a firm believer that everything happens for a reason. I wasn’t given this baggage to just stumble through life. I was given this to help those around me carrying the same thing. Offer a new way to hold it, a new way to drag it along, a new way to move around with it.

No one wants to go through this. No one thinks this chronic illness journey is a glamorous one. But if it helps one person, I’d do it all over again. No one deserves it. No one should walk this road alone. I would do it over and over again to help even one person feel less alone.

So, my chronically ill friends, I’m so sorry. I’m sorry that you have to walk this journey. I’m sorry that you have to deal with all the things that comes with this. I’m sorry that have to stumble through the day while putting on a happy face. I’m sorry that the words “but you don’t look sick” are thrown at you.

Please know, that you are strong. Really.

The strongest people are the ones that are at war with their body. I urge you to keep fighting. It gets better, it gets easier, you learn, and you grow.

You aren’t selfish for saying no to things. You aren’t a horrible friend for not responding to their messages or ignoring their calls. You aren’t lazy for struggling to leave the house. You aren’t a burden for the things you go through.

You are doing your best to survive, and that’s ok.

To my able-bodied friends, please remember that we are trying to fight a battle you don’t see. Please know that when we don’t text back, it doesn’t come from a bad place, it comes out of a place of self-preservation, where we’ve hit our limit and life is just too hard.

I hope that these few moments we’ve had together have left you with something. You’ve made my journey worth it.

I’m always around for a chat. If you have questions, ask. If you need a friend, let’s talk. I know this journey can feel incredibly lonely, so don’t be afraid to reach out to someone who can understand. Send me a message on Instagram @laelgracexx (I might take a while to respond, please forgive me, just trying to survive), I can’t wait to hear your story and share what I’ve learnt. You’re doing amazing!

~Lael x

Spotlight Story Program: Meet Lauren Perry

Finding your community, building your network, and boosting yourself up. These are all things that our latest Spotlight Story Program feature writer has not only incorporated into her daily life, but has projected into her activism as she empowers other young people in the disability community. And that focus on connecting with others and becoming your own best advocate stems deeply into all that Brighton, England’s very own Lauren Perry represents in her life. Living with Tourette’s Syndrome and Ehlers Danlos Syndrome, 21-year-old Lauren has needed to create power, joy and success for herself while also dealing with the journey that chronic illness can complicate.  She’s been super proactive, using social media to create her own platforms that allow for meetups with others living with chronic illness in the Brighton area, and her virtual platform with her blog and Instagram page @aticcersguidetolife, that allows her to raise awareness, connect with others, learn how to advocate even better and share about her health journey. And she also shows off her cool wheelchair with pink wheels, a must-see! Lauren’s packed so much life advice in her feature about her young adult life with health struggles and being part of InvisiYouth’s Global Brand Leaders Program that anyone can gain tips.

Hey! I’m Lauren, I’m a 21 year old disabled student living in Brighton, England. I set up my disability blog and Instagram page @aticcersguidetolife with a hope to raise awareness on life with hidden disabilities, advocate for those who are unable to do so themselves and educate people on the wider issues disabled and chronically ill people face.

Updating friends and family on my health was becoming pretty exhausting in the early stages of my illness, but I wanted to make sure they all felt included in the process as I knew they genuinely wanted to know, so starting my blog was a great way to document my journey.

My health struggles started after a coccyx injury following a fall at work when I was waitressing, coinciding with laryngitis that wouldn’t go away and at the age of 17, I became incredibly unwell.

I was sleeping for days at a time and my body was not healing properly. I struggled to get through my A Level exams and got mediocre grades. I went from a high achiever who played in bands (saxophones, clarinet, piano), ran, went to the gym 4 times a week, swam, played hockey, and partied—to the girl who had to stopped working, slept all day, and was in incredible amounts of pain in a matter of weeks. And I’ve never been the same since.

The doctors blamed my mental health initially. I struggled with panic disorder and depressive disorder, however I knew this was different. The debilitating fatigue was different. At its worst, I was sleeping 28 hours at a time. I woke up for one hour to have a drink and slept for a further 15 hours. This sleeping pattern continued till the moment I had carers at 20. I’ve had countless misdiagnosis’, painful scans, frustrating results and random symptoms- chronic illness is a journey .

Having a disability in my late teens, I noticed quickly how isolating that can be, particularly as a university student. It seemed that although there must be thousands of disabled students, I didn’t know any and I felt there must’ve been other people that felt similar to me.

I decided to set up ‘A little poorly- Brighton’ in 2019 after a year of being at university. We now have over 400 members in Brighton, England where I have founded an online community and we formed friendships and a support network for chronically ill people living in Brighton and Hove, along with their carers. Now, I regularly arrange meet ups where I have professionals run workshops such as cooking with a disability, accessing work with a disability, improving hospital experiences for chronically ill patients, self-defense classes, art therapy, just to name a few.

In addition to ‘a little poorly – Brighton,’ I also take great pride in my Instagram page and newly updated website. Accessibility is a topic incredibly close to my heart. Through my platforms, I strive to help people access the inaccessible world. InvisiYouth has inspired me to build confidence to make friendships online with people all over the world. The Pandemic has taught me that accommodations can be made for disabilities. Online learning has been incredibly accessible to me as a disabled student, I spent many months battling for more support

I started my health journey not truly identifying as a disabled woman and rather just a 17 year old girl. I saw myself with misdiagnoses and I didn’t feel confident or educated in disability. Doctors often say “I think you have this” and then leave you with so many unanswered questions surrounding this new potential diagnosis.

I’ve learned to laugh in the most unfunny moments, make the most out of bad situations and I have shown my mental strength and resilience is important above all. I think I’ve become incredibly calm. In situations where perhaps someone else may panic or be overwhelmed—for myself—relatively these things often feel ‘small’ and I’m therefore pretty good at staying calm.

I’ve sadly had to grow up a lot quicker than my peers, but I also think that I’ve become much more understanding of other people’s emotions and gained a level of emotional maturity as my priorities have had to shift being unwell.

My diagnosis list is ever growing. Tourette’s Syndrome hit me out of the blue at 19 in my first year of university. I lost my speech out the blue for two weeks when I was 20 following a hemiplegic migraine which replicated a stroke.

Nothing surprises me anymore.

Honestly, if you don’t laugh, you’ll cry and that’s the best way we’ve found to approach my illnesses. It went from “why me- it’s always me” to “only me, typical” making a positive out of a negative or light and laughter out of an awful situation is very important. As chronically ill people, we often joke that we are unqualified doctors.

I truly believe the sheer knowledge that having a chronic illness has taught me is fascinating and perhaps something I would not have delved into had I not become unwell. I like to consider myself a receptionist or admin assistant to my own body—I appreciate my disabilities for supporting my love of stationery and organization—I bet you’ve never seen paperwork as organised and colourful as mine!

As kids we always get told not to talk to strangers and to some extent, I agree. However, had I not found such an amazing online community through Instagram I wouldn’t have found InvisiYouth, its Global Brand Leaders Program, or other content creators with disabilities. I’ve spent hours messaging other people on the internet .

Speaking to people online is such a powerful tool in management of disability. I’ve found many of my consultants through Facebook groups. My Rheumatologist who diagnosed my EDS was recommended through a Facebook group. My sleep consultant was recommended by a few people on Instagram. My cardiologist similarly.

It makes me feel like there’s loads of people like me. People who just ‘get it’ but can also support me in my journey and answer any questions from the perspective of poorly people not just as medical professionals.

The feeling of bumping into people who follow me on Instagram brings me so much happiness. The few times I’ve been approached in the streets after my pink wheels have been spotted from a distance on days where I’ve been struggling or having issues with accessibility- it makes all the appointments and the hours of pain worth it.

In that moment you feel less alone and feel like what you’re doing is really important. It’s comforting to know when you have a weird symptom that your doctor has never seen before, that there’s someone on the other side of the world who has it too and has a little bit of wisdom that might help.

  • I suggest having a list of all our conditions, medication, allergies and care needs summarised to take to appointments is incredibly useful, it really helps save time in appointments too. I used to get really frustrated when I felt like most of my appointment was spent covering medical history and less on my current issue.
  • Don’t be afraid to tell doctors or medical professionals what you need! You are an expert of your own body!
  • Find your people- there are people out there for you, who will understand you, support you, and think like you. Put yourself out there! People will put effort in and people will make time if they want. No one is ever too busy for the people they want to see!
  • If you don’t laugh, you’ll cry.
  • You’re braver than you believe, stronger than you seem, smarter than you think, more loved than you’d ever know and twice as beautiful than you ever imagined

My main message to share: You can do anything you want to do. The world might not be built for disabled people, but if you find the right people and understand your own needs, you’ll be able to access the inaccessible!

Don’t worry about other people’s judgement for any step of your journey. You should be able to live life to the fullest and enjoy it like anyone else your age.

Not all wheelchair users can’t walk just like not all disabilities are visible. Society strangely seems to have taught us the opposite.

Accepting I needed to use a wheelchair in order to have fun/ live life as my peers do has honestly been the best decision I have ever made.

10 Year Throwback and Chronic Illness Memories

September 28, 2019

This blog post was originally written for our friends at Diversability! A big THANK YOU to Diversability for featuring me as a guest blogger. I am such a fan of this social enterprise that is truly reshaping the way #disability is discussed and how we can generate positive opportunities for the disabled community! You can read my article below,  OR make sure to check it out on Diversability’s blog page here, and like/comment!

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With 2019 coming to an end, it’s easy to feel like time is passing by quickly, and we can wonder if any of those goals or resolutions we set at the start of the year are coming together. That is an even larger concern when you are living with a chronic illness because there can already be some self-doubt of not achieving goals.

As someone living with chronic illnesses, I understand how we put this pressure on ourselves because there’s an immediate fear our health setbacks will be the demise of our goals.

After my tennis injury igniting my chronic illnesses almost eleven years ago now, I worked so hard to find the balance of striving for success while maintaining my ‘new normal’ of health.

But as the years continued, I felt the ‘what ifs’ creep into my mind. That worry if I would be more successful or happier if I never got injured and had the subsequent health constraints that are sometimes part of my day-to-day.

But something quickly happened that turned my mentality on its head.

I discovered a young adult chronic illness advocate YouTuber, someone that would become a friend and future philanthropy supporter of InvisiYouth Charity. In one of her advocacy videos, she mentioned she only started to feel a sense of serenity and accomplishment in her life when she took the negative stigmas of “chronic illness life” out of her mindset.

After watching, it was as if a light bulb went off and that guilt I put onto myself seemed so obsolete.

Why was I judging myself for things I couldn’t control?

Why was I automatically assuming if I had to adjust my goals for life, I was ruining my dreams?

Why did I look at my dreams as out-of-reach because they weren’t going to be on the same timeline as my “healthy/able-bodied” friends?

This is the truest fact for life with chronic illness/disability, and has become one of the major pillars of InvisiYouth’s mission: a life with chronic illness and a life of success/happiness ARE NOT mutually exclusive.

I can live every day with my chronic illnesses AND still be happy and successful. My life goals aren’t lesser than just because my health isn’t the stereotypical norm.

There is a framework in the media and society that if you have a chronic illness or disability, people must feel either sympathy for your struggles or inspiration by your daily act of just living. 

It is that negative connotation that causes us as the chronic illness/disability community to view our goals as harder to reach.

And while yes, there are certain things I cannot do any longer because of my health, that doesn’t mean I cannot adapt.

That doesn’t mean I cannot take a few more steps and add a bit more time to still achieve my dreams.

One of the best life lessons I’ve learned is somewhat of an analogy to cooking. Life shouldn’t be a shot in the pan, it should be a slow burn, allowing all the flavors of our goals to marinate.  We don’t need instant gratification, or a microwave fast-track to achievement.

We don’t need to scale our wins in life based on what others can achieve. Let your goals and dreams take their time to reach their full potential, and when you get out of that negative mindset and become proud of your life WITH chronic illness/disability instead of being angered by it, that is when serenity can be found.

So now, as I look at all my goals–personally, professionally, and with InvisiYouth Charity–for the end of 2019 and going into 2020, I won’t look at the unmet goals with sadness or worry, but instead, I will let it fuel my fire to figure out new ways to adapt my steps and continue moving forward.